Provider Guide for “What are Mammograms and Breast Cancer?” A slideshow narrated in Somali
This document is a companion piece for the tool: “What are Mammograms and Breast Cancer?” A slideshow narrated in Somali.
This project has been funded in whole or in part with Federal funds from the Department of Health and Human Services, National Institutes of Health, National Library of Medicine, under Contract No. HHS-N-276-2011-00008-C with the University of Washington.
This project was initiated by Kirkwood Shy, MD, MPH, University of Washington Professor of Obstetrics and Gynecology, in response to data from Harborview Medical Center’s primary care clinics indicating that Somali patients have disproportionately low rates of screening mammography. In October 2013, staff from EthnoMed commenced development of a culturally-tailored video-slideshow narrated in the Somali language for Somali women. The slideshow, narrated in the Somali language, was developed as a tool to educate Somali women on mammograms and breast cancer. It addresses common barriers to mammography for Somali women as identified through group discussions, interviews, and published literature. This slideshow presentation is intended to be shown during clinic visits and facilitate dialogue between clinicians and Somali patients about mammograms and breast cancer.
Data about screening rates for African-born women in Washington State and nationally are not available primarily since data for African-born individuals are typically aggregated with African Americans. But there are some limited data available from immigrant women who participated in the 2010 National Health Interview Survey (NHIS). According to the NHIS, immigrant women who had been in the United States for 10 years or more were almost as likely as American-born women to report having had a mammogram within the past 2 years (70.3% and 73.1%, respectively) (CDC, 2012). However, only 46.6% of immigrants who had been in the U.S. for less than 10 years reported being screened in the past 2 years (CDC, 2012). The disproportionately low screening rates observed at Harborview may not be unique. In March 2013, a presentation at the Eighth National Conference on Quality Health Care for Diverse Populations highlighted efforts of a hospital system in Minnesota to increase rates of mammograms among Somali women patients in response to differences in breast cancer screening rates between white patients and patients of color, including Somalis.
Staff from EthnoMed and the author led several in-depth group discussions with Somali women in a community setting about screening mammograms. In addition, Harborview’s Somali caseworker/cultural mediator led a discussion about this topic with Harborview’s female Somali medical interpreters (the caseworker/cultural mediator is a medical interpreter who has received additional training to serve as liaison between limited English proficient patients, their community, and medical providers).
These discussions with Somali community members and interpreters explored barriers to mammography and solicited suggestions for the slideshow content. They also gave insight into the participants’ knowledge about cancer and breast cancer screening. Fourteen of the 17 Somali women who gave input, including interpreters and community members, were over 40 years of age and all were Muslim.
In addition, individual interviews were conducted with seven Harborview Medical Center physicians with many years of experience caring for Somali women. Physicians were asked about their experience with Somali patients regarding mammograms, perceptions of barriers, common knowledge gaps they have observed, and what has seemed to work well when discussing screening mammograms with Somali patients.
Major themes identified from interviews, group discussions, and published literature, were integrated into the slideshow content. The slideshow narrative and this provider guide were reviewed by physicians and Somali community members, and tailored based on their feedback.
Dr. Kirkwood Shy served as clinical advisor for the project.
This 18-minute video slideshow, narrated in the Somali language with English language subtitles, discusses mammograms and breast cancer, with a focus on addressing major barriers to screening. The slideshow focuses on assisting Somali women in making an educated decision about getting a mammogram. The slideshow is organized into three major sections:
- A narrator begins the slideshow by explaining that breast cancer can start as a lump and that it is important to find a lump when it is very small—before it can be felt by the hand. The narrator stresses that when breast cancer is detected early, it is easier to treat and the treatment is usually more successful. Following this is an explanation of the risks and benefits of mammogram.
- The slideshow then focuses on Amina, a fictional Somali woman, and her experience getting her first mammogram. Interviews, group discussions, and published literature suggest that some of the greatest barriers to mammography for Somali women are related to the exam itself, particularly with respect to issues of modesty, lack of knowledge about the procedure itself, and fear of pain and injury. Amina’s experience shows a Somali woman navigating through some of these barriers. Amina is shown at various stages of the mammogram process. Amina’s mammogram does not find abnormalities; however, the slideshow explains next steps in the event that something is found. It clarifies that follow-up tests do not mean that a woman has cancer.
- The narrator ends by describing what breast cancer is in more detail, including potential risk factors and possible symptoms of breast cancer. The statistic “one in eight women will get breast cancer” is presented. With your patients, it is important to clarify that “one in eight” is a lifetime risk. It's a much lower rate per decade and especially in the 40s, 50s, and 60s - the ages that we target for mammographic screening. Viewers are encouraged to discuss questions or concerns with their health care provider. Contact information for resources for free or low-cost mammogram services are provided at the end of the slideshow.
(See also: slideshow script)
Suggested Viewing Venues
This tool is intended to foster dialogue about mammograms and breast cancer between clinicians and patients. Several Somali women suggested that the provider join the patient when she views the slideshow as this highlights the importance providers place on screening mammograms and allows the patient to ask questions afterward. Many of the Somali women involved in this project suggested that health care facilities show the slideshow in the exam room or somewhere where the woman can watch in private. As one woman described, “This is to respect the modesty of Muslim women.” In addition to the clinical setting, women suggested that health educators show the video in the community to women-only audiences.
Summary of Themes
The following describes the major barriers to mammography for Somali women gleaned from conversations with community members and providers, and findings from published research.
Low Health Literacy and Lack of Knowledge about Cancer
Many Somali women have limited knowledge about cancer in general and breast cancer screening options. This was evident in the discussions EthnoMed staff held with Somali women and also in focus groups conducted with Somali women in Minnesota (Minnesota International Health Volunteers, 2006) and Seattle (Al-Amoudi, Cañas, Hohl, Distelhorst & Thompson, 2013). In those groups, lack of knowledge was the most frequently cited barrier to mammography. Some participants in Minnesota expressed concern that mammograms cause breast cancer. Screening itself is an unfamiliar concept; many people find it difficult to understand the utility of having a medical test to prevent disease. However, Somali women in all those groups expressed a strong desire to learn more about breast health and breast cancer screening.
No Perceived Risk
Somali women may have had limited experience with breast cancer in Somalia or in refugee camps and may not know women in their community here who have the disease. One provider reported that since diabetes is common in the Somali community in our area, patients often ask for diabetes testing. This suggests that Somali women are interested in improving their health but because they may not have encountered breast cancer among friends or family, they are less interested in mammograms. In addition, many Somali women may not understand risk factors for breast cancer or may underestimate its prevalence. Some may know others who got a mammogram that ultimately didn’t find anything, making it seem unnecessary.
Fear and Stigma
Women in the Minnesota focus groups expressed intense fear and stigma surrounding breast cancer; these themes were echoed by some of the women participating in discussions with EthnoMed staff. Many Somali women—like many refugees and immigrants from resource-poor countries— consider cancer to be a death sentence. Some participants in the Minnesota focus group said they felt more afraid of breast cancer since learning more about it in the United States. Though these appear to be contradictory statements, the authors posit that women only learned enough about cancer to be frightened but not enough to feel empowered. Some women may also be uncomfortable talking about diseases, such as cancer, believing that this may cause illness in itself (Minnesota International Health Volunteers, 2006). Mammograms are also perceived to be painful and uncomfortable; there is worry that mammography may even cause disease.
The Seattle focus group researchers noted that, “Silence around the topic of breast cancer was very pronounced in this group,” (Al-Amoudi, Cañas, Hohl, Distelhorst & Thompson, 2013). When the women were asked about perceptions of breast cancer in Somalia, focus group participants reported that they never talked about it back home. This was even true among family members when they lost a loved one to breast cancer. When asked what they had heard about breast cancer in the United States, the women were mostly silent. Women told the researchers that here, they would likely only talk about breast cancer with their physicians. The researchers suggest that this silence has much to do with taboos related to discussing female anatomy (Al-Amoudi, Cañas, Hohl, Distelhorst & Thompson, 2013).
Some Somali patients may not develop trusted relationships with providers for a myriad of reasons, including historical traumas and limited interactions with the American health care system. Interpreters at Harborview and participants in the Minnesota focus groups suggested that, due to mistrust in the health care system, women may not believe results from medical tests (Minnesota International Health Volunteers, 2006). Inconsistent appointment scheduling can also complicate the capacity for providers to build strong rapport with their patients. A few physicians said that the language barrier may impede building trust because many clinics often use telephonic rather than in-person interpreters.
The vast majority of Somalis are Muslim and religion plays a very prominent role in their lives. Women in the Minnesota focus groups described how “Allah decides who gets disease and who is spared,” but they also recognized that one could take precautions to be healthier (Minnesota International Health Volunteers, 2006).
Several physicians interviewed perceived that a woman may feel that her fate is in God’s hands; that God is taking care of everything. With diseases like breast cancer which may seem so overwhelming, a woman may feel fatalistic about her chances of survival and may consider her prognosis to be solely God’s will.
In general, modesty is highly valued by Somali women. As mentioned in a previous section, some of the silence around breast cancer can be attributed to discomfort discussing female anatomy. There also may be concern that the mammogram will be performed by a male technician. Some women expressed concern about the need to remove all clothing during the exam. It is important to tell women in advance what to expect in their mammogram.
Mammogram services may be difficult to access, particularly with respect to transportation options, since mammograms may not be offered in the same location as the doctor’s office. The cost of a mammogram may also impede access if the woman is uninsured or underinsured. Uninsured women may be unaware of free/low-cost services. Some women may find it challenging to go to medical appointments due to the language barrier, transportation issues, and medical costs.
Level of Acculturation
Research suggests that immigrant women who have been in the United States for less than ten years are less likely to get a mammogram than women who have been here for over ten years (Wallace, Torres, Beltran & Cohen-Boyhar, 2013). As recent immigrants, they may have a harder time understanding the health care system and the importance of screening tests. However, a few providers told us that some of their Somali patients have more readily gotten mammograms when a younger family member was present at the office call and encouraged their loved one to be screened.
Insights from Providers
Harborview Medical Center physicians discussed how they approach the topic of mammograms with Somali patients. Various strategies are described below. It is important to recognize that discussing mammograms with patients requires nuance and greatly varies based on your relationship with the individual patient. Always use your own clinical judgement when interacting with patients; these are merely some jumping off points for talking about this complex issue.
Inform patient so she can make an educated decision
Approach the conversation as a way to provide information about mammograms and breast cancer so the patient can make an educated decision. One provider says, “Don’t try and force them to do something that they feel strongly about. I tell the patient, ‘This is your choice, but my job as your doctor is to educate you about what this means.’” Be honest about the limitations of mammograms. It is important to tell patients all of the risks and benefits so they can make informed decisions. Be respectful of her choice.
Give it time
Take time to have a meaningful conversation with your patient and really understand her motivations. It is helpful to schedule a longer visit the first time you discuss mammograms. If the patient is not interested in a mammogram the first time you discuss it, you can revisit it at subsequent appointments. Consider each visit an opportunity to share more information about mammograms. Be persistent but never pushy.
Trust is the key and the patient needs to know she is doing it for herself, not for the provider. In the end, the provider wants the patient to come out of the discussion about mammograms feeling like she understands the test. “If you do it the other way—in the short term—the patient may feel bullied and humiliated and you didn’t accomplish anything because mammograms are a repeat activity, so in the long-term, the patient may not want to do anything.”
Target your message to patient’s motivations
Each person has different motivations and you will be more successful if you approach each person individually. One size does not fit all. According to one physician, “A good primary care physician is like a good coach.” Another provider explained that refugees generally have two things in common – the experience of poverty and feeling overwhelmed. Patients may have numerous complex issues that they are coping with so it is important to have an open conversation and explore these concerns in depth.
- Make the patient part of the conversation. Explore what the specific barriers are for each patient through use of open-ended questions. For example:
- What have you heard about mammograms?
- What are your concerns about mammograms?
- What is it about mammograms that may feel overwhelming?
- Walk through the patient’s concerns and address them in detail; make the discussion interactive and avoid using negative language.
- Focus group discussions describe that many Somali women respond more strongly to visual stimulation. Try to incorporate images into your conversation, not just words.
Many physicians spoke about some patients expressing “fatalism” (the word consistently used by the physicians) by declining mammograms because “Allah [God] will take care of things.” Religion is often a central part of the Somali culture and plays a large role in how health is conceptualized. However, it can be an uncomfortable topic so carefully consider your relationship with the patient before using this approach.
- One provider acknowledges the role of God and where medicine intersects.
- Another responds by saying, “God offers you tools to take care of your health and this is one of them.” It may be helpful to explain that these tools may not be in Somalia, but they are available here and worth taking advantage of.
Describe cost-benefit of early detection
Be sure to describe both the risks and the benefits. For example, “Yes, mammograms are uncomfortable, but we have found that it may find cases of breast cancer early. Breast cancer may be much easier to treat if caught early.”
Centers for Disease Control and Prevention (CDC). Morbidity and Mortality Weekly Report, January 27, 2012 / 61(03);41-45, Retrieved from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6103a1.htm
Al-Amoudi, S, Cañas, J, Hohl, SD, Distelhorst, SR & Thompson, B (2013): Breaking the Silence: Breast Cancer Knowledge and Beliefs Among Somali Muslim Women in Seattle, Washington, Health Care for Women International, DOI: 10.1080/07399332.2013.857323
Wallace, PM, Torres, S, Beltran, J & Cohen-Boyhar, R. Health Care for Women International (2013): Views of Mammography Screening Among U.S. Black and Hispanic Immigrant Women and Their Providers, Health Care for Women International, DOI: 10.1080/07399332.2013.862794